Sharing secrets a powerful tool to defeating the stigma of mental illness

Advocates push for changes, compassion

If secrecy fuels the stigma that surrounds mental illness, Patrick Kennedy says, then speaking out about one’s illness can be a powerful tool to defeat it.

“In my book, ‘A Common Struggle,’ I said that we are only as sick as our secrets,” said Kennedy, son of the late U.S. Sen. Ted Kennedy and former U.S. Congressman from Rhode Island, who will share his story of mental illness and addiction at the Southeastern Symposium on Mental Health in Greenville on Saturday.

“Today, that’s the mantra of my life,” he told The Greenville News, “and speaking out is something I encourage others to do.”

About 43.8 million people ─ or one in five Americans ─ has a mental illness, according to the South Carolina Institute of Medicine & Public Health. And 10 million of them suffer from a serious condition such as schizophrenia or bipolar disorder.

“When every one of us finds the courage to share our stories, we’ll see the old ways of thinking erode,” Kennedy said via email, “and we’ll begin to see mental illnesses for what they truly are: treatable health conditions from which people recover and live fully, happy and productive lives.”

The symposium brings together experts and advocates focused on improving care for people who suffer from mental illness and ending the stigma that accompanies it.

Kennedy, who authored the Mental Health Parity and Addiction Equity Act, will speak at the conference along with celebrity and author Mariel Hemingway, whose family has been plagued by suicide.

Dr. Kenneth Rogers, chairman of the department of psychiatry at Greenville Health System, said organizers assembled mental health professionals and advocates in the Upstate to develop the conference. It features at least 50 sessions, he said, some geared toward continuing education credits for providers as well as helping people in their day-to-day lives.

“Subjects range from the impact of the Affordable Care Act on mental health and treatment in the Upstate to how art can impact treatment for depression,” he said. “There are folks from all over the country who submitted abstracts that span the breadth of what’s going on in mental health now from policy issues to how to engage with patients.”

And reducing stigma is at the top of the list, Rogers said.

“A lot of times, people just don’t understand,” he said. “By making folks aware, by bringing in some of the big names to talk about their struggles, they end up with a very different feel and experience.”

Changing attitudes

One of the issues that feeds stigma, he said, is a fear that someone will become unstable and violent, as rare as that is.

“As we begin to educate people that folks with mental health issues are actually less aggressive than the general population, and hear stories about folks who suffer from depression who are going to work, doing their own thing, that they live across the street and their kids have been going to school together for years, then they won’t have to be wary of these people,” he said.

“But we have to ... be more open and more candid, and that should decrease the stigma substantially,” he said. “Ultimately, it’s about being able to have the conversation.”

Discrimination against people with mental illness is imbedded in the culture, said Mary Giliberti, CEO of the National Alliance on Mental Illness, who’ll be speaking to business leaders at the conference about supporting sufferers in the workplace.

While communities rally around people with some conditions, that’s not the case with mental illness, she said.

“For many people, having a mental illness is a very isolating experience,” said Giliberti. “We are out to change that.”

A “separate and unequal” system of health care for people with mental illness also perpetuates the stigma, Kennedy said. The Mental Health Parity and Addiction Equity Act was intended to end that by requiring insurers to treat mental health conditions as they treat other physical health conditions.

“The radical idea was that the brain is part of the body,” he said. “But today, we still see widespread disregard for the law by many insurers. We still hear about denials of care, burdensome treatment limitations, and higher costs for those who are seeking care. So, it’s no wonder why stigma still exists.”

Stigma prevents people from getting the help they need, Giliberti said, while the lack of funding for services is a consequence of the stigma.

“Part of the attitude is that somehow these are less important than other health conditions that we allocate resources to,” she said. “Part of the effort that we’re making in Greenville, and also nationally, is to address the issue of lack of services and support. Our hope is that ... it will lead to more people saying to their legislators, why don’t we make the investment?”

‘Conditions like any other’

Kennedy said that Washington needs to address the crisis.

“It’s no secret that the state of mental health and addiction in the United States is in absolute disarray,” he said. “We see escalating suicide rates, a deadly opioid overdose epidemic, and veterans who are waiting months and months to get care. That’s all in addition to the crisis of homelessness gripping many communities, and the fact that our jails and prisons have become de facto mental health facilities.

“All of these are symptoms ─ and outcomes ─ of a truly broken system.”

The nation needs a system that diverts those with serious illnesses into community-based treatment and support services, instead of putting them in jail, Kennedy said. It also should offer collaborative care, early intervention and prevention, and measurement-based care to ensure the most effective treatments are used, he said.

“And we need each and every citizen of this country to agree to hold our leaders accountable,” he said. “Investing in comprehensive solutions based on what’s known to work is the only way forward.”

This year’s event focuses on adult psychiatry while next year’s will deal with children, Rogers said.

“We will have a spotlight on the latest cutting-edge treatment going on in mental health and substance abuse, because it’s changing so quickly,” he said. “We know a lot more about how to treat mental health problems in general than we did 20 years ago. But the focus is really on the community and how do we move the discussion foward.”

The fact that communities like Greenville are starting conversations about the issue is exciting, Giliberti said.

“Ultimately, we want to ... help people understand that mental illnesses are health conditions like any other,” she said. “It’s just that they affect the brain.”

The Southeastern Symposium on Mental Health event will be held May 6-7 at the Hyatt Regency Downtown. To learn more, go to sesmh.org.